What is Lynch syndrome?
Lynch syndrome is an inherited condition that increases your risk of colon cancer and other cancers. Lynch syndrome has historically been known as hereditary nonpolyposis colorectal cancer (HNPCC).
A number of inherited syndromes can increase your risk of colon cancer, but Lynch syndrome is the most common. Doctors estimate that about 3 out of every 100 colon cancers are caused by Lynch syndrome.
Families that have Lynch syndrome usually have more cases of colon cancer than would typically be expected. Lynch syndrome also causes colon cancer to occur at an earlier age than it might in the general population.
How common is Lynch syndrome?
Lynch syndrome is not a rare condition but rather an extremely under diagnosed one. Lynch syndrome is not a rare condition but rather an extremely under diagnosed one. Please discuss with your doctor for further information.
What are the symptoms of Lynch syndrome?
The common symptoms of Lynch syndrome are:
- Colon cancer that occurs at a younger age, especially before age 50
- A family history of colon cancer that occurs at a young age
- A family history of cancer that affects the uterus (endometrial cancer)
- A family history of other related cancers, including ovarian cancer, kidney cancer, stomach cancer, small intestine cancer, liver cancer, sweat gland cancer (sebaceous carcinoma) and other cancers
There may be some symptoms not listed above. If you have any concerns about a symptom, please consult your doctor.
When should I see my doctor?
If you have any signs or symptoms listed above or have any questions, please consult with your doctor. Everyone’s body acts differently. It is always best to discuss with your doctor what is best for your situation.
What causes Lynch syndrome?
Lynch syndrome runs in families in an autosomal dominant inheritance pattern. This means that if one parent carries a gene mutation for Lynch syndrome, there’s a 50 percent chance that mutation will be passed on to each child. The risk of Lynch syndrome is the same whether the gene mutation carrier is the mother or father or the child is a son or daughter.
How gene mutations cause cancer
The genes inherited in Lynch syndrome are normally responsible for correcting mistakes in the genetic code (mismatch repair genes).
Your genes contain DNA, which carries instructions for every chemical process in your body. As your cells grow and divide, they make copies of their DNA and it’s not uncommon for some minor mistakes to occur.
Normal cells have mechanisms to recognize mistakes and repair them. But people who inherit one of the abnormal genes associated with Lynch syndrome lack the ability to repair these minor mistakes. An accumulation of these mistakes leads to increasing genetic damage within cells and eventually can lead to the cells becoming cancerous.
What increases my risk for Lynch syndrome?
Please discuss with your doctor for further information.
Diagnosis & treatment
The information provided is not a substitute for any medical advice. ALWAYS consult with your doctor for more information.
How is Lynch syndrome diagnosed?
Your doctor will take a detailed family history to see how many of your relatives have ever had colon cancer. If you’re high risk, your doctor will send you for genetic counseling and DNA testing. If one person in your family is diagnosed with Lynch syndrome, your other relatives may want to get tested.
It’s very important to get screened if even one of these things is true for you:
- Three of your relatives had or has colorectal cancer
- You have a relative under age 50 who has or had colorectal cancer
- Colorectal cancer has been in two generations of your family (like a great aunt and a cousin, or a grandparent and parent)
How is Lynch syndrome treated?
Colon cancer associated with Lynch syndrome is treated similarly to other types of colon cancer. However, surgery for Lynch syndrome colon cancer is more likely to involve the removal of more of the colon, since people with Lynch syndrome have a high risk of developing additional colon cancer in the future.
Your treatment options will depend on the stage and location of your cancer, as well as your own health, age and personal preferences. Treatments for colon cancer may include surgery, chemotherapy and radiation therapy.
Cancer screening for people with Lynch syndrome
If you have Lynch syndrome, but haven’t been diagnosed with an associated cancer — sometimes referred to as being a “previvor” — your doctor can develop a cancer-screening plan for you.
Stick to your doctor’s recommended plan. Screening for cancer may help your doctor find tumors at their earliest stages — when they’re more likely to be cured.
Research hasn’t established which cancer screening tests are best for people with Lynch syndrome. As a result, medical groups vary on which tests they recommend. Which tests are best for you may depend on your family history and which gene is causing your Lynch syndrome.
As part of your cancer-screening plan, your doctor may recommend you have:
- Colon cancer screening. A colonoscopy exam allows your doctor to see inside your entire colon and look for areas of abnormal growth that may indicate cancer. Colon cancer screening reduces the risk of dying of colon cancer by removing precancerous growths called polyps. People with Lynch syndrome typically begin colonoscopy screening every year or two starting in their 20s.
People with Lynch syndrome tend to develop colon polyps that are more difficult to detect. For this reason, newer colonoscopy techniques may be recommended. High-definition colonoscopy creates more-detailed images and narrow band colonoscopy uses special light to create clearer images of the colon. Chromoendoscopy uses dyes to color colon tissue, which may make it more likely that the flat polyps that tend to occur more often in people with Lynch syndrome are detected.
- Endometrial cancer screening. Women with Lynch syndrome may have an annual endometrial biopsy or ultrasound to screen for cancer beginning in their 30s.
- Ovarian cancer screening. An ultrasound can be used to assess your ovaries and this may be recommended beginning in your 30s. By comparing annual ultrasound images, your doctor may be able to see changes to your ovaries that may indicate cancer. Your doctor may also recommend annual blood tests.
- Urinary system cancer screening. Your doctor may recommend periodic screening for urinary tract cancers. Analysis of a urine sample may reveal blood or cancerous cells.
- Gastrointestinal cancer screening. Your doctor may recommend endoscopy screening for stomach cancer and small intestine cancer. An endoscopy procedure allows your doctor to see your stomach and other parts of your gastrointestinal system.
While research proves the effectiveness of colon cancer screening for reducing the risk of dying of the disease, similar research hasn’t proved the effectiveness of screening for the other types of cancer. Still, experts recommend considering screening for these other types of cancer despite the lack of evidence.
Your doctor may recommend other cancer-screening tests if your family has a history of other cancers. Ask your doctor about what screening tests are best for you.
Aspirin for cancer prevention
Recent studies suggest taking a daily aspirin may reduce the risk of several cancers related to Lynch syndrome. More studies are needed to confirm this. Discuss the potential benefits and risks of aspirin therapy to determine whether this might be an option for you.
Surgery to prevent cancers caused by Lynch syndrome
In certain situations, people with Lynch syndrome may consider surgery to reduce their risk of cancer. Discuss the benefits and risks of preventive surgery with your doctor.
Surgical options for preventing cancer may include:
- Surgery to remove your colon (colectomy). Surgery to remove most or all of your colon will reduce or eliminate the chance that you’ll develop colon cancer. This procedure can be done in a way that allows you to expel waste normally without the need to wear a bag outside of your body to collect waste.
Little evidence exists to show that removing your colon has any advantage over frequent cancer screening, in terms of helping you live longer. Yet, some people prefer the peace of mind or may prefer avoiding frequent colonoscopy exams.
- Surgery to remove your ovaries and uterus (oophorectomy and hysterectomy). Preventive surgery to remove your uterus eliminates the possibility that you’ll develop endometrial cancer in the future. Removing your ovaries can reduce your risk of ovarian cancer.
Unlike with colon cancer, screening for ovarian cancer and endometrial cancer isn’t proved to reduce the risk of dying of cancer. For this reason, doctors usually recommend preventive surgery for women who have completed childbearing.
Lifestyle changes & home remedies
What are some lifestyle changes or home remedies that can help me manage Lynch syndrome?
The following lifestyles and home remedies might help you cope with Lynch syndrome:
- Find out all you can about Lynch syndrome. Write down your questions about Lynch syndrome and ask them at your next appointment with your doctor or genetic counselor. Ask your health care team for further sources of information. Learning about Lynch syndrome can help you feel more confident when making decisions about your health.
- Take care of yourself. Knowing that you have an increased risk of cancer can make you feel as if you can’t control your health. But control what you can. For instance, choose a healthy diet, exercise regularly and get enough sleep so that you wake feeling rested. Go to all of your scheduled medical appointments, including your cancer-screening exams.
- Connect with others. Find friends and family with whom you can discuss your fears. Talking with others can help you cope. Find other trusted people you can talk with, such as clergy members. Ask your doctor for a referral to a therapist who can help you understand your feelings.
If you have any questions, please consult with your doctor to better understand the best solution for you.
Hello Health Group does not provide medical advice, diagnosis or treatment.
Lynch syndrome. http://www.mayoclinic.org/diseases-conditions/lynch-syndrome/basics/definition/con-20025651. Accessed August 11, 2017.
Lynch Syndrome: Get the Facts. http://www.webmd.com/colorectal-cancer/lynch-syndrome-get-the-facts#1. Accessed August 11, 2017.
Lynch Syndrome International. https://lynchcancers.com/. Accessed August 11, 2017.
Review Date: August 11, 2017 | Last Modified: August 14, 2017